LIVING WITH LYMPHEDEMA

Think of a busy, multiple lane highway that links several cities together. As long as the highway is clear, traffic whizzes by 24 hours a day at astounding speeds that leave your head spinning.

When a major accident occurs on the highway, several lanes may be forced to close. The multiple lane highway is now down to one lane.

The result: It becomes choked with slow moving traffic and irate drivers.

This is the apt analogy Dr. Mary Rosenow, breast surgeon and medical director of The Breast Center, Memorial Hospital of Carbondale gave as she described what happens when the lymphatic system in the human body is damaged.

The Lymphatic System

Lymph fluid contains white blood cells that help us fight infections. It flows through a vast network of lymph nodes and vessels that circulate it to all parts of the body. If the lymph nodes and vessels become damaged, it becomes difficult for the lymph fluid to flow in that part of the body, resulting in a blockage or accumulation of excess fluid.

What is Lymphedema?

The American Cancer Society describes lymphedema as the build up of lymph fluid in the tissues, which results in swelling usually of the arms or the legs. But it can affect other parts of the body as well.

Primary lymphedema, which is uncommon, develops because lymph nodes or vessels are missing or not working the way they should. Secondary or acquired lymphedema can often occur as a result of cancer or cancer treatment, following lymph node removal or damage due to scarring. Other reasons for lymphedema developing include surgery, trauma or infection.

Lymphedema of the Lower Extremity

Dr. George Kao, a radiation oncologist and medical director of the radiation oncology department at Memorial Hospital of Carbondale says that lymphedema in the lower extremity is most often seen in those who had their lymph nodes surgically removed in the groin or pelvis (for example, someone with cancer of the uterus).

“The success rate is not as good for lower extremity treatment, since the fluid has to drain upward, but gravity pulls you down and hence it can be a bit more difficult.”

Lymphedema of the Upper Extremity

According to Kao, lymphedema of the upper extremity is most often seen in breast cancer patients who had their lymph nodes removed in the armpit. While there is a slight increase in chances of getting lymphedema following surgery, the chances increase following radiation treatment.

Rosenow agrees, “If a surgeon removes about a dozen lymph nodes from the armpit, there is a 15 to 20 percent chance of measurable lymphedema occurring in the patient due to the scarring that takes place. About half of these people will have swelling that is noticeable.”

Any infection that occurs or additional radiation therapy can increase the number.

Radiation

According to Kao, “With three-dimensional conformal radiation therapy or intensity modulated radiation therapy, you can treat as little as possible of the affected area.”

“As the surgical and radiation techniques evolve the incidence of patients getting lymphedema is less.”

Sentinel Node Biopsy

New techniques like the Sentinel Node Biopsy are fast replacing the standard lymph node biopsy (Axillary Node Dissection), for those who are diagnosed with breast cancer, as it markedly reduces the chance of lymphedema occurring immediately or later on in their lives.

In a lymph node dissection a surgeon takes out a pad of fat from the armpit near the affected breast, containing about a dozen or more lymph nodes, in order to determine the extent of the cancer, appropriate treatment and the long-term outlook.

In the Sentinel Node Biopsy the surgeon injects a radioactive substance (tracer) into the breast. “Over the next couple of hours, the tracer follows the path that tumor cells would most likely take from the tumor area to the lymph nodes and gets stuck in the first lymph node in the chain,” explains Rosenow.

This lymph node, the one that cancer cells are most likely to travel to, is called the “sentinel” node. The surgeon uses a little, handheld, gamma counter to take just that one (or sometimes a few) lymph nodes out and sends it to the lab.

“If no cancer cells are found in the sentinel node, no more nodes are removed,” says Rosenow. The fewer lymph nodes removed in a Sentinel Node Biopsy in comparison with the dozen or more removed in an Axillary Node Dissection, ensure that the chances of a patient suffering side effects, which could include lymphedema, are kept to a minimum.

“Of course, if cancer cells are found in the sentinel node, then a surgeon goes ahead with the standard lymph node dissection,” says Rosenow.

Kao advises breast cancer patients who had an Axillary Node Dissection to be vigilant at all times about watching for lymphedema, as it can develop at any point in their lives.

Is it Treatable?

Lymphedema can be managed successfully; but there is no cure for it.

According to the National Lymphedema Network, treatment procedures for lymphedema developed in Europe over the last 30 years, but have only been accepted by American medicine in the last decade or so.

Marlisa Nolan, occupational therapist certified in hand therapy and lymphedema treatment at Saint Francis Medical Center’s Outpatient Rehabilitation Services, in Cape Girardeau, MO, agrees, “Components of it started in Europe in 1932; but as far as awareness and treating it effectively go in the US, we are still in the baby stages, since it’s relatively new.”

“The key is in getting treated by those who are trained and certified in lymphedema therapy and management,” advises Kao.

Experienced in treating lymphedema patients for the past seven years, Lynn Atterberry, occupational therapy assistant trained in lymphedema treatments, at Rehab Unlimited, Memorial Hospital of Carbondale says they determine why the patient has lymphedema in the first place and ensure that it is safe to start treatment.

“For example if they had a blood clot, it’s not safe to start treatment, since you might end up dislodging the clot, which could result in a stroke,” she says.

“Patients with a history of congestive heart failure or compromised cardiac issues have to be specifically okayed by their physicians for lymphedema treatment; since we can move between a liter to a liter and a half of lymph fluid in a 24 hour period,” says Atterberry.

“We check the range of motion of the extremity that’s swollen, feel the texture, measure the affected and non-affected parts, before we start treatment,” explains Atterberry.

Complete Decongestive Therapy

Complete Decongestive Therapy (CDT) is used for the treatment and management of lymphedema and is available mostly at occupational and physical therapy units attached to hospitals. CDT consists of manual lymph drainage, compression therapy, exercise, compression garment fitting and home instruction for managing self care at home over a lifetime.

“Studies say that the most reduction in lymph fluid occurs within the first seven to 10 days of treatment,” states Nolan.

This is the reason she sees lymphedema patients five times a week for the first two weeks, after which she starts decreasing the frequency of treatment to about three times a week.

Manual Lymph Drainage: Massage

“When circulation is compromised, as it is in lymphedema patients, it is essential to massage first before any form of compression treatment,” says Madona Nabua, physical therapist who manages lymphedema conditions at St Mary’s Good Samaritan Hospital, in Mt. Vernon.

“Manual lymph drainage is a gentle, manual massage that helps re-route the lymph fluid to healthier, lymph node areas, so that the body can get it back into the blood system to get rid of the fluid,” says Nolan.

With more than 15 years of occupational therapy experience, Nolan says the special massage, aids in moving the lymph fluid from problematic areas into healthier areas of the lymphatic system.

Jennifer Maaks, occupational therapy assistant at the newly opened, Occupational Performance and Rehab in Marion cautions that deep pressure can damage the lymph node. “Manual lymph drainage uses a light touch massage to do a gradual kind of draining of the edema,” she explains.

“Most patients admit it works, once they’ve experienced it a couple of times,” adds Atterberry.

Compression Therapy: Bandaging

The massage is typically followed by multi-layered bandaging over the extremity.

“The bandages soften the edema that may be there as it can be hard sometimes,” says Atterberry. “It’s a multi-layer process, with the sleeve or sock going on first, followed by cotton tight padding, where we want the extremity to look like a cone. Then we add the bandaging.”

It is recommended that bandages are low-stretch and worn all the time, initially. Later on they are worn all the time at night and the patient graduates to wearing compression garments during the day.

“It should conform to the arm or the leg when resting and provide a barrier that prevents the skin from stretching when exercising, to make the muscle pump more effective,” says Nolan. “Patients tell me it feels like a soft cast.”

Exercise

Nabua says she cannot stress enough the importance of exercising after compression bandaging.

“While in bandages, I have my patients do some simple exercises to help make the muscle pump more effective; since it aids in circulating the lymph fluid into the system,” says Nolan.

“They are made up of a thick, panty hose kind of material and help maintain the results,” adds Nolan.

Easy to slip into, they make the transition back to daily living easier for lymphedema patients, rather than them having to deal with multi-layered bandaging during the day.

While custom fittings (for very large or odd shaped extremities) are sometimes offered by the therapists themselves, a patient can also approach standalone companies that specialize in custom compression garment fitting. Over-the-counter compression garments are also freely available, for those who don’t require custom fittings.

Rivi Meltzer, the owner of Intimate Foundations in Carbondale offers custom fittings for custom made compression garments. She says the doctor normally tells her how much compression the patient requires.

“Compression refers to tightness and you can have support hose with graduated compression of say 10 to 20 mm/hg. This essentially means its 20mm at the foot and ankle and lessens to 10mm as it goes up,” she says.

According to Meltzer, there are several ranges ofcompression within 10 to 20 mm/hg itself. Depending on the individual patient’s needs and the physician’s directive, other compression configurations for support hose could include 20-30 mm/hg (for mild lymphedema), 30-40 mm/hg (for moderate lymphedema), and 40-50 mm/hg (for severe lymphedema).

Nolan says she takes weekly measurements to see how small the arm or leg is getting and fits her patients for compression garments when she sees a plateau in the measurement or thinks the size of the extremity in question has gone down considerably.

“For the arm, we typically recommend a sleeve that goes from wrist to armpit and a gauntlet, which is a fingerless glove; so that patients can take it off and wash their hand,” says Atterberry.

“For the leg, it would go either from the toes to the hip or toes to the knee, depending on the type of lymphedema they have,” she adds.

Home Instruction

“The key to the program is for people to learn how to manage their care on their own,” says Maaks.

“With so much stagnant fluid accumulated in the body, it’s a great opportunity for bacteria to flourish,” says Nolan. Since lymphedema patients are more prone to infection, they learn a whole new way of living.

“It becomes a lifelong management problem – with bandaging every night and compression garments in the day,” says Nolan.

“If you get sick or injured, it compromises the lymphatics,” says Nabua.

“Lymphedema will recur, but if the patient is well trained and follows good hygiene; cleanliness; uses soaps with less alcohol content; takes care not to break the skin when cutting finger nails; uses gloves in the garden; ensures no lab works are done and is just careful to minimize all sources of bacteria and infection; he or she should be all right,” advises Nabua.

Maaks says they do try and teach some coping skills in addition to providing regular lymphedema treatment. “People just don’t have to live with it, they can take steps with treatment and learn to manage it,” she says.

Compliance

“Sometimes patients don’t want to wear the bandaging out in public, as it draws attention,” says Maaks. “We try and work with finicky patients and figure out a schedule they will be compliant with.”

“Everyone wants a quick fix today, whether it is losing weight or getting rid of a condition like lymphedema,” says Nolan. “However there is no fixing lymphedema, only managing it and keeping it in check.”

A stubborn patient of Nolan’s once went without bandaging for an entire weekend, against all advice. “He thought if the swelling goes down, that means it’s gone,” recalls Nolan.

The patient was horrified to discover that the swelling came back after his weekend of non-compliance. “Because he was in the middle of treatment, I was able to get him back on track pretty soon. But all the work I did with him before his weekend of non-compliance was pretty much a write-off,” sighs Nolan.

Atterberry agrees, “Lymph nodes don’t come back once they have been damaged. Hence it’s necessary for patients to follow recommendations and learn to manage their lifelong condition the best way possible.”

Coping with Lymphedema

“A system that used to be automatic is now manual,” says Marlisa Nolan, OT certified in hand therapy and lymphedema treatment, Saint Francis Medical Center, Cape Girardeau, MO.

“You have to help the system every single day now, because with lymphedema it is damaged and no longer able to work on its own,” says Nolan.

This abnormal accumulation of lymph fluid that causes permanent swelling throughout the body, typically in the extremities can be debilitating. “Simple things like shoes may not fit anymore,” says Dr. George Kao, medical director of the radiation oncology department, Memorial Hospital of Carbondale.

“While the average lymphedema doesn’t interfere with movement, it can be emotionally and socially upsetting,” admits Dr. Mary Rosenow, medical director of The Breast Center, Memorial Hospital of Carbondale. While one can use several aids to cover up a breast removal, a person cannot really cover up a swollen arm or leg.

“Patients with lymphedema can become self conscious and feel as if there is a sudden cramp on their style, in terms of shopping for clothes,” says Rosenow. Yet different people handle it differently and if a lymphedema patient can try to look at the positive side of things, it could perhaps help them cope better.

“If you have a problem, get with a physician,” advises Lynn Atterberry, OTA trained in lymphedema treatments, at Rehab Unlimited, Memorial Hospital of Carbondale. “We are working on broadening the scope of our program so that more doctors get familiar with the treatment options available today.”

Lymphedema is permanent when it happens and the patient has to learn to live with it and manage it the best way she or he can, says Rosenow.

Getting Measured

Katherine Heim, is a certified mastectomy and orthotic fitter and the customer service director at Southern Illinois Surgical Appliances, located in West Franfort, with branches in Mt. Vernon, Harrisburg and Carbondale.

“Measurements for compression garments are usually taken first thing in the morning, since most people will wear the garment at that time,” she says. “This makes sure we get as close to their natural measurements as possible, thereby ensuring a good fit.”

Sometimes doctors prescribe pneumatic pumps for use by lymphedema patients. This device helps squeeze the lymph fluid through any lymph channels that are present. When the device deflates, blood is allowed to circulate through the area. After many repeated cycles, this device may help reduce swelling.

“If you use a pneumatic pump – use it just before you come in for a fitting,” advises Heim.

Customized Compression Garments

“After trying on their custom fit garments, I’ve had patients throw their arms around me in sheer joy,” says Rivi Meltzer, the owner of Intimate Foundations in Carbondale.

Offering custom fittings for custom made compression garments, for men and women with lymphedema and related circulatory problems; Meltzer also provides custom fit bras for large breasted women and for those who have had mastectomies and lumpectomies as a result of breast cancer.

“Custom fittings do tend to take longer, since you have to consider other things like older people who may not be able to get the garment on easily,” says Meltzer. “In that case I may put in a zipper for ease of access.”

“Sometimes I get patients who have a skin reaction – an allergy or burn – to the compression garment,” says Meltzer. “For situations like that, I can line the garment with silk, to keep the skin more comfortable.”

An expert on custom fit bras, Meltzer now offers a lighter weight breast form for breast cancer patients with lymphedema. “If they wear the standard mastectomy bra, it may be problematic, since they are also coping with lymphedema,” says Meltzer.

Her custom bra provides support from under the breast rather than via the straps and may be a good option, she says. Other modifications she can provide include a bra with pads to help those with lymphedema in the breast or the underarm.

“For people with lymphedema, I can have almost anything made that will help them,” she says with a smile.

Signs of Lymphedema

According to the American Cancer Society (ACS), the signs of lymphedema may include:

* A full or heavy feeling in an arm or leg (limbs)

* A tight feeling in the skin on the arm or leg

* Less movement or flexibility in your hand, wrist or ankle

* Difficulty fitting into clothing in one specific area such as the sleeve of your jacket or your socks being tight

“If you have had lymph nodes removed or radiation treatment, you may want to examine your body in front of a mirror,” says ACS. “If you notice any of the signs listed above, or if they last one to two weeks, call your doctor immediately.”